Nearly Three Years - Part 2

It's been nearly three years since Drew's cochlear implants were activated! Here's a look back at some of my favorite posts:

Jingle Bells Part 2
Off And A Little Conversation
Happy Halloween from Drew!
Thanksgiving
Drew Singing on Christmas Day
Please Talk to Me!
Mr. Bron

Nearly Three Years

It has been nearly three years since Drew's cochlear implants were first activated - and what a journey it has been! Here are some of my favorite videos from the past three years.

How I Feel?

This post by Christian and Lily's Mom does an excellent job of describing my feelings about Drew and his hearing loss. I think I do "have it together" most of the time, but there are always occassions when the reality of Drew's deafness, and how it will affect his entire life hits me like a ton of bricks.

It's not-so-much the silent time during bath, or the inability to communicate well during the night that worry or upset me, because we've become so used to handling those situations. Drew is becoming excellent at lip reading, and between that and gestures, he does well understanding what we are telling or saying to him.

But the fact that he is deaf will impact him in many, many ways. Not just in the classroom, where he'll likely miss pertinent information that could affect his progress. But how will his deafness impact his friendships? If he is at sixth grade camp, sleeping, and can't hear all of the boys sneaking out in the middle of the night to torment the girls cabin, not that they should, but they are boys who are going to do mischievous things, he'll miss out on that. Tiny little events that bond friends together. I know it is silly, I know it is irrational. But life with a hearing child was taken away from us. Drew is deaf. And sometimes that is just hard to accept.

The Good, The Bad & The Ugly

It's amazing how a little phone conversation with Drew can bring a little bit of good back into my world. I'm traveling for work again this week, and had the opportunity to talk with the little guy on the phone earlier this evening. We chatted about his trip to the bowling ally today.


"No strike."


We chatted about his pizza lunch.


"Cheese on top!"


And I got to hear my most favorite words.


"Love you more!"


But things have been bad, and often downright ugly. And I'm struggling to just to get through day by day. This whole IEP process has not brought out the best in me. I am a "Type A" personality, probably to the strictest of its' definition. I'm not quite the OCD personality I used to be (who can be with two children?), but I like to have 100% control of my life at all times. I like to know not only what I am doing tomorrow, but next week and the week after that. I am very scheduled by nature, and I don't really enjoy change. I can handle change, but like change most when it comes with notice.


That's me. Take it or leave it. I've learned a lot about myself over the years to be able to recognize this. It can be a strength, and at times a weakness. But it is just who I am. I like to have control over things in my life. And while this type of personality attributes to many of the successes I have had both personally and professionally, this personality is just not working for me right now.


In this IEP-being-at-the-mercy-of-a-school-district process, I'm not good. It just isn't a process designed for people like me. A system where you lack control of when a meeting will be scheduled, or even where your child will attend school just days from now. For us "planners", this whole system is for the birds, and really wears on you mentally and physically. I've been having a lot of trouble sleeping at night. Going through this process, which is now coming up on five months, has been exhausting. I worry about every last detail. Did I articulate Drew's needs well enough? What research am I missing? Who haven't I contacted that might be of assistance?

Now that we have some dates on the calendar, I am doing better. Drew's evaluation will take place on the 13th. The meeting to determine his IEP eligibility is on the 19th. The IEP meeting is scheduled for September 2nd. But I still lack control. What will the evaluation say? What placement will we be offered? Will the school district place Drew in the program we have chosen? There are a lot of unanswered questions, and I'm just plain tired. I'm ready for Drew to start school. Drew is ready to start school. Drew's Sister is upset that Drew won't be attending school with her on the first day of the 2009-10 school year. (Isn't this great?: Drew's Sister is enrolled in the oral deaf education program we want Drew to attend, but our deaf child isn't enrolled in the program. Excellent.)

On the surface, it appears that Drew is doing OK. He speaks. Well enough for those around him to understand his needs most of the time. He understands much of what is said to him. But there are still major areas of concern. His listening is compromised at times. He will never hear as well as his hearing peers. He can't pronounce or even hear some of the phonemes of the English language. He deletes consonants from his words. His grammar is incorrect most of the time. He can't count, and doesn't seem to understand fully the concept of counting. He has developed a bit of a stutter, where he'll be searching for words in his head, yet can't get them to come out of his mouth. His list of needs continues. Our goal is for Drew to mainstream into our school district by Kindergarten. Without continued, appropriate services now, that just won't be possible. The typical vocabulary of a kindergartner is 10,000+ words. And that's just vocabulary, the tip of the iceberg when it comes to being able to perform at the level of his hearing peers.

I don't want to look back on this process one day and wish I would have done something different. And to date, I'm pretty proud of the decisions we have made for Drew. Cochlear implants were right. Bilateral implantation was clearly the right decision. An oral approach has worked very well for Drew and our family. The decision to change audiologists has worked well. The therapy we have chosen has been right. And now, we're in a situation where we lack the control, and a decision will be made that will significantly impact Drew's future. I just pray that the right placement is made, so that three years from now Drew walks through the hallways of our elementary school with his sister. And all of his peers. On the way to meet his kindergarten teacher in the mainstream.

"Swish"

Recently the Pediatric Cochlear Implant Circle asked me to write an entry for their "CI Circle News" focused on my feelings as a father upon learning that Drew was deaf.

I put it off for a few weeks, wondering what to say. In some ways that day seems far in the past, and in another way I still feel tender bruises. Of course it's difficult to get this personal about my feelings as well.

However, to be true to the purpose of this blog, which is to help other families who follow in our footsteps find support and empathy, to become empowered, I finally sat down to write on Sunday. This is the ink that was drawn from my pen.

Swish.

I couldn’t see. Heavy drops of rain pelted my windshield, lingered, and eventually were pushed aside by the wipers in the fashion of a blinking eye. Swish. I saw nothing ahead but a long road of silence. Of fear. Of Dread. Swish.

Swish. I couldn’t breathe. That long, deep exhale of relaxed contentment, of a world full of bright futures and sunny skies that exists in the world of children were crushed by the dark news of which I had just heard. My chest is heavy. Swish.

“Hello? How did it go?”

“He can’t hear.”

I couldn’t hear. I didn’t want to hear. It can’t be. Didn’t he hear me drop the metal dog bowl just the other day? Remember when he startled to the dog barking? Say that again?

I can hear the raindrops pitter-patter upon the hood of my car, the growl of the engine, the fast-paced beating of my heart – but my son can’t hear? He’ll never get to dance to music like his sister holds so dear? He’s deaf? Swish.

I was numb. I was alone. My wife was alone, learning of this news with no one to hold, finding that all the “I love you” whispers and lullaby tunes had truly gone unheard. He’ll really never know my voice? Here I was, separated from her by a few miles of road, buckets of falling rain, and seemingly everlasting minutes of helplessness. Swish… Swish… Swish…

Have you ever hugged someone and clung to each other for dear life, feeling as though if you let your grip loosen, if you even just moved an inch, that you’d fall off the face of the earth?

Have you cried on another’s shoulder not for your own pain, but for the struggles you foresee ahead for your boy – girl – loved one?

Have you ever felt utterly helpless when looking upon a child’s eyes…and then being unable mask your fear and talk to that child, to tell them “everything will be ok”?

Ever learned what you want in life more than anything else, only at the very moment that you learn it’s the one thing you cannot have?

Swish. What did I do? What can I do?

Nothing.

Swish.

An Amazing Experience: Meeting MLB Pitcher Jim Abbott

On a recent trip to California, Drew's Dad and I met Olympic Gold Medalist and former Major League Baseball pitcher Jim Abbott. We were fortunate enough to attend a meeting my company was holding where Jim was the keynote speaker. It was such an amazing experience to listen to him speak about his ability to become a successful baseball player, against all odds.




Born without a right hand, Jim Abbott defied all of the odds to become a major league baseball pitcher. Despite being born with a disability, he truly believes that more has given to him than was ever taken away by his birth defect. He talked to our group about the need to A.D.A.P.T. in order to overcome our circumstances and achieve our goals:

• Adjustability: Thinking of a different way to do things, given your circumstances. For Jim, he had to make adjustments just to be able to tie his shoes. For Drew, we use a food saver to water proof his cochlear implants for swimming. No matter what the circumstance, little adjustments can make just about any situation work.
• Determination: We are constantly told about the things we can not do. If we start to believe that we can not do something, it limits our abilities. We must filter out all of the negativity in order to reach our goals.
• Accountability: Never let the circumstances of life be an excuse for not meeting your goals. You are accountable for your actions. Have you made the most of your talents today?
• Perseverance: At times, your goals may not seem possible. But so much is possible if you just hang on to your goal and keep working!
• Trust: The ability to know that you are prepared and can do anything! Bring trust into every situation! You can achieve just about anything if you trust in your abilities.

During the presentation, Jim demonstrated little adaptations he had to make in order to be able not only to pitch, but field his position. He showed us how he would get his glove back on after pitching the ball, in order to field his position. In fact, I was the one that got to play catch with him during this part of the presentation! Check playing catch with a New York Yankee pitcher-that-threw-a-no-hitter off of my "to-do" list!

This presentation was designed to speak to my inner "sales representative" soul, in a time of economic strife, but instead struck special cord as a mom of a child with special needs. There were points during his presentation where I could feel myself tearing up. What did Jim's parents do to raise such a strong, secure, determined son? How had Jim handled being made fun of for being and looking different? When did Jim learn of his disability, and what did his parents tell him about it? There were so many questions that ran through my mind. I wanted to learn as much as I could from him on how I can impower Drew to be self-confidant, determined, successful and proud of being different.

Fortunately, Drew's Dad and I were able to spend a considerable amount of time one-on-one with Jim, and were able to talk about our personal situation. We asked Jim if he could give us any advice on how to empower Drew. Jim told us of his Dad, and that one of his dad's key motto's to him was "Be a leader today!" Jim's Dad talked with him each day about the choices he had to make, and that if Jim was a leader, all of his friends and classmates would follow.

Jim also spoke of how being a part of a team, as baseball provided, was a great way to help him "fit in". He strongly encouraged having Drew participate and lead in team sports, which would lead to acceptance without questioning his differences.

If you believe in yourself, nothing can stop you, and then amazing things can happen. We left with an autographed baseball: "To Drew, Anything is Possible!" Jim Abbott

***Drew's Dad here...I just wanted to add this video in case one of you hadn't heard of Jim Abbott. Enjoy!***

Back in Business

We have power! It was restored late on Thursday evening. I have never been so happy to do laundry and grocery shopping in my life! (Although our fridge and freezer is still sparse; it will take a while to replenish all we lost.)

There are still tens of thousands of people in Ohio, many of our friends, still waiting on power to be restored. And then there are those in Texas where Ike came ashore that could be without power for weeks. We send our thoughts their way; five days without power was very difficult. I can't imagine longer.

Picture of the boat ropes used during the storm to tie the electrical pole to the tree. It broke at ground level from the 70+ mph winds:

Picture of the debris pile in our yard. It runs the length of our property, and before it settled was waist high:

Powerless

Literally. We woke for the fourth day in row to a home without electrical power. Sure, there were signs of hope on day three, like the seven power trucks in our driveway early last night, but in the end, we are powerless.



The electrical company was hard at work yesterday, trying to restore power to us and hundreds around us. They were successful in fixing the downed power lines just up the street from us and next to our house. They had everything ready to be restored as we departed for Drew's Sister's dance class. We were happy, energized and for the first time in days, hopeful.

We returned home to no power. We couldn't understand what the problem was until we were told that a neighbor, and I use that term loosely, had failed to report the chopped-in-half electrical pole in his yard. Moron. The electrical company could not restore our power, as it is supplied through that pole area, and would knock off the transformers again. So, they have to bring in a new electrical pole, which could take days. We've even been told power won't be restored until next week!

Laurie left an interesting comment on my last post, Ike Came and Went, wondering what people with hearing loss do in these circumstances. In our situation we are very fortunate. Drew is too young to need to listen to weather reports or communicate on the phone; we are doing all of that for him. He doesn't rely on closed captioned television of use a relay system with the telephone. Many of the assistive devices for the deaf and hard of hearing are either not age appropriate or not needed.


We have, however, had issues with battery power for his implants. We used our two sets of rechargeable batteries on Sunday and Monday, but by Tuesday morning they were all dead with no way to recharge them. So, we are now using disposable batteries. We are very fortunate to have a full box of batteries, enough to last about ten days. From now on I will always have on hand a full weeks supply of disposable batteries, just in case this situation happens again. Batteries are in high demand right now, and very hard to find. While I'm sure it is not impossible to find them right now, there were points when stores were without power to sell them and there were points where the shelves were bare. I could not handle the stress of trying to find power for Drew to hear, so we will always maintain a supply large enough to last one week.


Hopefully we won't need these in the future, but who knows?

Ike Came and Went...

Hurricane Ike came roaring through Ohio on Sunday, unlike anything we have ever seen. With winds still in excess of 70 mph, he knocked down trees and power lines, leaving hundreds of thousands without power.

We have been without power since Sunday evening, with little hope of it returning anytime soon. Right now the estimates are anywhere between today and Sunday. Drew's Dad and I have found a Panera Bread with power, so we have been able to connect to the outside world for the first time in days.

We had several tree limbs fall and lost a couple of roof shingles and some trim around the windows. Our large oak tree is currently holding up the electrical pole that runs along our property. We emptied the refrigerator of all of its spoiled contents. While we have had some damage and a lot of clean up, we are much more lucky than others right around us. We are ready for life to return to normal.

I really don't know how those that live in Hurricane areas do this year after year. We have gone from station to station looking for gas, have had issues finding milk and water. No one has any ice. Anywhere. Some restaurants will have food but no drinks. Others, the opposite. My kids haven't had milk in nearly a week. We were really unprepared for this to happen, so maybe that is part of the problem, but it has been emotionally and physically draining. I feel for those that do this multiple times a year, year after year.

Thank You, Drew

For giving me moments daily to stop and give thanks for the gift of hearing:

While driving a few days ago, I noticed an ambulance pulling out of a fire station. It turned to come down the road toward us, so I pulled to the side of the road and stopped. Drew's Sister was listening to the Doodlebops, Drew's Dad and I were talking, and all of the noise in the car continued as we watched the ambulance speed by. After is passed, I began to pull back onto the road when I heard a beautiful noise coming from the back seat. Drew was mimicking, nearly perfectly, the sound of the siren that had just gone roaring by.

While blowing bubbles on the porch before dinner last night Drew heard an airplane in the sky. Looking up, he saw it, pointed to it and said, "ahhhh." It is the first time he has actually been able to find the source of the sound. We do not live close to the airport, but for some reason all commercial jets were flying over our house last night. Drew's Dad, Drew's Sister and I sat on the porch, rejoicing each time Drew heard an airplane, pointed to the sky and said, "ahhh."

I'm not sure that there will ever be a day where I take Drew's hearing for granted. Thank you, Drew, for allowing me to have an appreciation for something I used to (and so many others) take for granted.

How Much Did that Cost?

We've been out and about a lot now that the winter weather is finally breaking. It looks like spring has finally sprung, hopefully for good. I mentioned to Drew's Dad the other day as we ate lunch how I felt like people were staring at Drew's ears less and less. He quickly told me that I just don't notice the staring anymore. As I sat in the restaurant, I looked around and realized he was right. People were staring, but I just didn't notice. Nor did I care. Drew can hear. Drew can talk. And that is all that matters.

On that note, I really appreciate the people that talk to me about Drew's ears. They will ask questions. And I don't mind answering, no matter how silly they are. The interesting thing is that it is mostly children that ask questions. And the questions are so heartfelt and sincere. We were playing in the mall play area the other day when a couple of boys, who looked to be about six or seven years old, came up to me and said, "What's on his ears?" I explained that Drew was deaf and that those little "things" on his ears allowed him to hear. They said, in the nicest tone, "Oh, we're sorry. That's sad that he can't hear." They were so genuine. I went on to tell them that while he can not hear without his "ears" on, it is a blessing that he can hear at all. They were hooked on every word I said, and were genuinely interested in Drew. They followed Drew around the entire time we played, helping him climb on the rocket ship and crawl through the tunnels. They thoroughly enjoyed playing with Drew. They loved hearing Drew say "Hi," and asked him to say it on a number of occasions. I wish that adults had the innocence of children, and as we left, I told the boys' Mother's just how nice they were to Drew and that I wished more people we like their sons.

On a separate occasion we were playing on the playground at Graeter's Ice Cream (which, by the way, if you are ever in the Columbus area, you must have dessert at Graeter's!). A boy, about eight years old, came up to Drew and I and asked if he was wearing hearing aids. I told him that they were a "kind of hearing aid" that helps deaf people hear. The little boy looked at me and said, "Cool. How much did that cost?" I laughed. It was such an innocent question, and as I was laughing I heard his Mother say, in that embarrassed motherly voice, "Conner, we don't ask those kinds of questions." It was so funny. I explained that it cost a lot, "more than some houses. But we are just thankful that Drew can hear." The boy talked and played with Drew. He had so much fun rolling a ball with Drew and hearing Drew say "ball" over and over again.

I really don't recognize Drew without his ears on and I don't notice people staring, unless I'm looking for it. I've grown, because I really don't care anymore. You can stare all you want, but my little boy can hear! And that is what matters.

Mary, Did You Know?

I love Christmas! The snow, the shopping, the decorating, the family gatherings, the Christmas lights, the list goes on. I just love it! And now with my own children to share in the joy of the season, I love it even more. I am so excited to see Drew and his big Sister's face on Christmas morning! I think that Santa is definitely going to be making a stop at our house.

I turn my car stereo to the 24 hour Christmas music station on Thanksgiving Day, and it stays on that dial until Christmas day. I think I know just about every version of every Christmas song out there! There's one song in particular that leaves me with tears streaming down my face at least a couple of times a day. I can not listen to it without crying. "Mary, Did You Know?" It reminds me of the reason for the season, but this last year it has taken on new meaning.




God has given us our miracle now and not a day goes by without me giving thanks for the gift we have been given. Not a single day.

There are still days when I stop to think about all that has happened in the last year. Sometimes I can't believe that Drew can now hear. He. Can. Hear. He can hear me tell him that I love him. What a wonderful world we live in.

Thank you!

T-H-A-N-K-F-U-L

We were gathered with our family today and began discussing over our turkey and pumpkin pie all that we have been through since we last sat at the Thanksgiving table. Last years celebration was muted to say the least. We were just beginning our journey with Drew, and we were struggling through the first days of diagnosis. There was so much uncertainty for what Drew's future would hold. My how a year can change things! Today we were all happy, lively and quite honestly I think it was one of the best Thanksgivings ever.

I am overwhelmed with things to be thankful for this Thanksgiving. I could try to make a list, but it would not be exhaustive. If it were this post would be too long for you to read! It is hard to even know where to begin, and I don't want to accidentally leave something out. So, I find this appropriate:

T - oday. Everyday with Drew and his sister is a gift, and holidays are especially meaningful with them. Listening to Drew's Sister say her Thanksgiving prayer was beautiful. ("Thank you for the birds that sing. Thank you God for everything. Amen.") I am thankful that we were able to spend the day with our immediate families and that both sides of our family get along so well.

H - omework! I never thought I would say that, but I am thankful for all of the homework Drew's three therapists give us! Drew has three of the best therapists around. He likes each one of them so much and responds very well with them. They all do an excellent job of showing us exactly what they are doing and then explain why they are doing it. They give us so many things to work on at home with Drew. We also appreciate how well the three therapists work together and coordinate his therapy's.

A - udiology and technology. I am thankful for the gift of cochlear implants and for the audiologist that works with Drew. She continues to do an excellent job of programming Drew's processors so that he is hearing optimally with his implants. She has been very responsive to any equipment issues or questions we may have.

N - ew sounds. I am thankful for all of the new sounds Drew has made, from repeating "ahh" in the days just after activation to the "da da da" sounds now. I am thankful for the possibilities each day brings. Drew's first word, understanding of a new word or concept. I am thankful that Drew has taught me to appreciate all of these things that so many others take for granted.

K - ids. I am thankful for all of the families in this area that are willing to share their kids with us! When you have a child that is newly diagnosed as profoundly deaf, one of the best things you can do is to meet older deaf kids who are listening and talking with their cochlear implants. Those kids gave us the hope we needed to carry on in the early days of Drew's diagnosis. We are thankful for every family that shared their kid with us.

F - amily. Especially my Mom. I don't know what I would do without her. She watches Drew and his sister while I am at work each day. She takes Drew to his therapy sessions and is his therapist every day of the week. She has learned so much about auditory therapy and works with Drew on a consistent basis. It is no stretch to say that Drew's successes are directly attributed to her spending so much time working with him. I am forever grateful.

U - ncovered Medial Expenses can be APPEALED! I'm so thankful that I have learned how to appeal denied medical coverage and how to write appeals. I am thankful that my insurance company has overturned their previous decision in all of my appeals thus far. I am also thankful to all those who have walked this path before, as I know I have fought far less coverage issues than others before me.

L - ove. I am thankful for my relationship with my husband. It is amazing how much stress can be put on a relationship when you bring a baby into the world. It is even more amazing how much additional stress is put on a relationship when you have a child with a disability. We have managed to make it through this, and our relationship is actually stronger today having gone through the past year. I am very lucky to have him in my life and I am thankful that he is the man my children call "Daddy".

Happy Thanksgiving to All!

The Special Mother

I recently stumbbled across this inspirational story written by Erma Bombeck:

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instruct His angels to make notes in a giant ledger.

“Armstrong, Beth; son. Patron saint…give her Gerard. He’s used to profanity.”

“Forrest, Marjorie; daughter. Patron saint, Cecelia.”

“Rutledge, Carrie; twins. Patron saint, Matthew.”

Finally He passes a name to an angel and smiles, “Give her a handicapped child.”

The angel is curious. “Why this one God? She’s so happy.”

“Exactly,” smiles God, “Could I give a handicapped child to a mother who does not know laughter? That would be cruel.”

“But has she patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it.”

“I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has her own world. She has to make her live in her world and that’s not going to be easy.”

“But, Lord, I don’t think she even believes in you.” God smiles, “No matter, I can fix that. This one is perfect –she has just enough selfishness.” The angel gasps – “selfishness? Is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a “spoken word”. Nor, will she consider a “step” ordinary. When her child says “Momma” for the first time, she will be present at a miracle, and will know it!”

“I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above them. She will never be alone. I will be at her side every minute every day of her life, because she is doing My work as surely as if she is here by My side.”

“And what about her Patron saint?” asks the angle, his pen poised in mid-air.

God smiles, “A mirror will suffice."

Happy Halloween!

I am so excited for Halloween and so happy that it is finally here! I think it is because I have the cutest little witch and pirate to take trick-or-treating tomorrow night. I have decorated the house this year like never before. We have pumpkins, ghosts and spiders adorning all of the tables and mantles in our house. We have carved pumpkins, baked pumpkin seeds and we even have put up ghost lights on our porch. Drew and his sister make make every day more enjoyable, but especially holidays.

I have been looking forward to Halloween for some time. Really since last year. You see, Halloween Day last year was the low point in our journey to "turn on" Drew's ears. You might think that D Day would be the low point, but really the days immediately following the diagnosis were worse. They were filled with so many unanswered questions. The uncertainly surrounding Drew's future made for some very long and difficult days. October 26th was awful, but the not knowing was even worse. How profound was Drew's hearing loss? What could be done? Would he go to school with his hearing peers? The list of questions went on and on and the uncertainty was unbearable.

Why was Halloween day, in particular, so hard? First, I found out that the audiologist that did Drew's test knew he had a profound hearing loss and did not tell me. After researching hearing loss, intervention and amplification over the weekend following Drew's test, I decided to call the audiologist. I had several questions for her on the testing she had run, results and amplification. I asked her, "Do you think Drew will benefit from hearing aids?" Her answer, "No, he will need a cochlear implant." How did she know he would need a cochlear implant if she didn't know the level of his loss? I requested the paperwork from his tests (she had not provided them to me on the 26th) and on the top of the paper she had written, "V Wave absent at 90db bilaterally". She knew he was deaf and did not tell me.

After finding out that a cochlear implant was likely in Drew's future, I decided to contact the insurance company to get information about our insurance plan. The representative from our insurance company told me that we had no (that's right, zero) coverage for hearing related issues. This included all diagnostic testing, hearing aids, cochlear implants and therapy for hearing related issues. When we learned of Drew's hearing loss I did not think that things could get any worse. But here I was learning that my insurance company would not cover the intervention that Drew needed. How would we pay for all of this ourselves? Luckily follow up calling in the days that followed revealed that we did in fact have coverage, so this fear was quickly dismissed.

It was cold and misting rain on Halloween day last year, which only added to my depression. I barely brought myself to cook dinner and once that was done I couldn't bring myself to do anything else. That included taking the kids trick-or-treating. Halloween was the one time throughout everything that I did not do what I should have for my children. I know that they will not remember the fact that they did no go trick-or-treating when they were so young, but I will remember.

I think that I have done a really good job handling all of the ups and downs surrounding Drew's hearing loss. From day one I jumped into finding out as much as I possibly could about hearing loss and intervention. I accepted the diagnosis and realized that Drew is going to have a great life. But there are days that were difficult and the anniversary of those days bring on a flood of new emotions. I am so happy with where we are at in this journey, but I remember what it was like at this time last year. It's a weird feeling to be so happy with where you are but remember how badly you felt just a year ago. At that time I could not have imagined how far we would come in just one year. I am confident that with time these memories will fall farther into the abyss of 'things not worth remembering' and the new ones of Drew hearing will be in the forefront of our minds.

That's What Friends (& Family) Are For

Dear Family & Friends,

It's been a year? In some ways it seems like yesterday, in others it feels like forever. We have known of Drew's hearing loss for one year. My how things have changed, and yet somehow feel the same.

I would like to take a moment and thank those that have helped us in so many ways throughout this year. We are so blessed to have such wonderful family and friends that care so genuinely for our family. I can not mention everyone or every little act of kindness, so I picked a few things that stand out in my mind:

• My Mom, Dad, Sister & Brother: Thank you. Thank you for giving me the pep talk I needed in the crucial moments after Drew was diagnosed. I don't know that I would ever stopped crying or gotten out of bed without your words of encouragement and support. Thank you for taking care of Drew's Sister with a moments notice so that I could take the first available appointment to see a doctor, audiologist or therapist. And thank you for loving all of us unconditionally. You mean more to us than you will ever know.


• My MIL: You have tracked down more people than I probably know researching cochlear implants and oral deaf education. I know that you have spent many sleepless nights gathering as much information as you can for Drew. You have also talked with powers that be at Children's trying to get Drew in sooner than what they tell me over the phone. Drew is known all over the city because of how much you talk about him - only because you love him so much.


• Drew's Great Aunt & Uncle: Thank you for calling upon a friend to get Drew in for his diagnostic ABR months sooner than we were originally scheduled. One of the hardest parts of this journey was the not knowing, and you shorted that time frame immensely. We can not imagine how different this journey would have been had we not traveled to St. Louis and seen the Moog School for Deaf Education. Those children gave us the hope we needed to carry on and to make the decisions needed for Drew to get him to this day. We are forever grateful.


• My Friends: For picking up the phone the day you found out about Drew's hearing loss. I know that you sat at your computer, reading the email I sent with the diagnosis, for some time trying to think of the perfect words, but you realized that there were no words to say. I needed your phone calls more than you know. Thank you for not being afraid to talk about Drew's deafness with me. Thank you for calling weekly to see how the little guy is doing (or are you calling to see how I am holding up?). There have been so many unforeseen things that have come from Drew's hearing loss, and one is how this experience has deepened our friendship. I am blessed to be able to call you friend.

Drew is an amazing little boy and I feel so lucky that I am the one he will call "Mommy." Through this year we have all laughed and cried together. We have celebrated milestones that we at one time thought might not be possible. The love I have for him and his sister is indescribable. Drew has an amazing journey ahead of him and I know that he looks forward to sharing it with you.

Love, Drew's Mom

A Long Over Due Update on Drew

Life with two young children is quite busy these days. Add in a full time job and a lot of family activities and my blogging somehow falls behind. With that I have failed to update all of the exciting things that have been going on with Drew! Here are some things he has been doing over the past few weeks:

• Drew has been concentrating hard on his motor skills and has made tremendous progress in the past week. He can climb the stairs like a champ. He is all business and can get to the top of the stairs in about two seconds flat. He is also starting to walk with his walking toy and does well putting one foot in front of the other. I can not help but notice that he struggles with his balance. I feel that he has some underlying vestibular issues as a result of his hearing loss that are affecting him. I am concerned that he is not yet standing on his own, but I am thrilled with how hard he is working on his motor skills. I spoke to the pediatrician about this at Drew's one year appointment and he did not seem overly concerned about the fact that Drew can not stand on his own. He said that he will reevaluate him at his 15 months appointment and go from there.
• Another area of concern has been Drew's ability to chew solid foods. Whenever he put solids in his mouth he would chew for a little bit and then when the food would get to the back of his throat he would gag and act like he was choking to death. Seriously, it has been very scary at times. In the last week he has begun to really chew up food and swallow it without choking! In fact the last four nights he has eaten some solid food and not had one choking moment. It seems like such a minor thing but it makes life so much easier! When he can chew on a biter biscuit at a restaurant for 30 minutes it makes our dinner much nicer. I think now we will move at a fast pace with him transitioning from jarred baby food to solid table food.
• Drew's babbling is expanding daily. He has added the /s/ sound to his repertoire. He also will try to "moo" like a cow when we work with him on animal sounds. We are working on body parts right now, using baby dolls, Mr. Potato head and ourselves as models of the spacialilty of various body parts, like eyes, ears, mouth, etc. Drew is very interested in mouths and will always touch mine when I am talking to him. I'll be interested to see if this is the first body part he identifies on his own.
• Drew understands the words "up" and "eat". It is very exciting to know that he is actually able to hear and comprehend different concepts. If I ask him, "Drew, do you want up?" he will put his arms in the air and wait to be picked up. I love that Drew has made me learn to appreciate little things like this. I am now practicing little things with him like, "How big is Drew?" and then throwing his arms in the air while saying, "So Big!" He has so much fun with that one.
• Giving kisses is Drew's favorite pass time now and Drew's Dad and I are loving it! I got three kisses (and by kiss I mean he leans in with an open mouth and slobbers all over you!) when he woke from his afternoon nap and Drew's Dad got eight kisses before putting him to bed tonight. Drew does not make the kissing noise while giving the kisses, but he will make it in response to our kissing him.
• Drew received a lot of "learning to listen" toys for his birthday and we are loving all of them! He has a house, barn, trucks, zoo and lots of new books. We use them to practice things like open and close doors, animal sounds, and one step directions like "Put the dog in the car". Drew is very active now and really likes doing these activities (except when he is supposed to do them at therapy! He clams up at all of his therapy appointments.)

Drew continues to amaze us daily with the progress he is making. October 26th will mark the one year anniversary of finding out that Drew is deaf. This month has been hard for me as I reflect back on my emotions during this time last year. I will share more on that later. It's time to watch the Buckeyes vs. the Boilermakers. Go Bucks!

Pavarotti's Passing

Today Luciano Pavarotti, the legendary tenor passed away. In reading the news, I found Pavarotti singing Ave Maria on YouTube and began to listen.

Our daughter was focused on watching The Wiggles and didn't notice, but about a minute into the song I felt eyes upon me.

Drew was sitting on the floor to my right and was staring directly at the little window with Pavarotti in the middle of a note. Over all the background noise, he determined that he wished to hear Lucianone sing. As the music continued, I took a moment to watch him, realizing that this little moment was a small bonus in life. Something I never thought I'd be able to share with my son.

Drew will never know Pavarotti (and I myself don't know much about him), and he certainly won't remember this little moment. But I will. Thank you Mr. Pavarotti.

Makin' Some Noise!

What a difference 23 days can make! Drew is making new noises daily. This journey is so amazing and we have only just begun.

In the last 23 days the loud, screeching sounds that Drew made before his cochlear implants have completely disappeared. Now our home is filled with beautiful "singing" and blissful laughter! It is so pleasing to our ears. He will sit on the floor for half an hour singing. I think that he can hear himself doing it, so he is getting used to his voice. It is so much fun to just sit and listen to the little noises he is making.

Drew is even mimicking sounds that we make, such as "ahhhh", "mmmm" and even raspberries. Whenever he is sitting on the floor not looking at me, I will make the raspberry sound and he will mimic it and turn in the direction he heard the sound coming from. He'll give me a cute little grin, as if to say, "Yeah, Mom. I heard you!" It is truly amazing! Whenever he is eating, we narrate the whole experience. It goes something like this:

Daddy: "OK, Drew. Open your mouth. It's time to eat some bananas!"
Drew: Opens mouth as wide as he can and sucks every bit of banana off the spoon. (He's a hungry and growing boy!)
Daddy, rubbing his belly: "Oh, Drew. Banana's are yummy. Yummy, mmmmm."
Drew: "Mmm, mmm"

Amazing!

We are enjoying each and every day with him - and his sister. When Drew's Sister was born two years ago, I don't think we took the things that she did in developing language for granted, but I know that we did not have an appreciation for how children learn to communicate through hearing. When Drew was born with profound hearing loss it gave us a great understanding of this amazing process and for that I am forever grateful. Now everything that both of our children do in developing their communication is truly special. Just yesterday, Drew's Sister (who is two years, three months old) broke out the "Why?" question. Drew's Dad and I have heard it about one hundred times since then and we will continue to hear it for years to come. And even though it can be irritating to hear, we are just so thankful that she is able communicate with us!

Observations

I have noticed a few changes in Drew since his surgery. I don't know if they are a coincidence or not, but none the less, noteworthy.

First, Drew has not done his back arch, scoot around on the top-of-his-head maneuver for two whole days now, a maneuver very typical of deaf babies. When holding him, he does not arch his back, nearly throwing himself from your arms. Maybe he still isn't feeling 100% and this will return, but he has never gone this long without arching his back.

Secondly, his balance seems to be a lot better. He was sitting up prior to surgery, but not all that well. The back arching was hurting his ability to sit up because he would throw himself backward to arch his back. With that, it seems like he is really sitting up. Drew's Dad and I were both amazed last night at how long he sat on the floor, and when he would tip from side to side he was able to correct back to the center. He really has not been able to do that before. Affects to Drew's balance system were a major concern to us going into the surgery, especially since we elected have him implanted simultaneously. While our research is in no way scientific, I think in Drew's case the surgery seems to have only helped his balance.

Third, he has not let out the typical Drew db screams. He would talk to us at db's so loud we thought he might give us hearing loss at times. But he hasn't done that. I don't know if it is because his throat is still sore from the intubation, or if maybe the loss of all residual hearing has left him unable to hear those sounds so he is not making them?

I think it will be interesting to see what other changes we notice in him in the coming weeks and if these things change as he continues to recover from his surgery.